We are so lucky, SO LUCKY! I mentioned in our stories last month about how there was a UK shortage of Delsym, which is an over the counter cough medicine in the states. It’s one of the few that has dextromethorphan in it, which is a drug that helps calm Mikaere’s brain (it’s very clever, the NMDA neurones in Mikaere’s brain have a glycine binding site, which means it’s constantly over firing, which contributes to neurone death and brain damage. So dxm blocks the other glutamate binding site, to give it a break so it can’t overfire, thus slowing down any deterioration, helping with seizures etc etc). So, huge ramifications for our boys day to day.
The problem is that it’s not available over the counter in the UK. It has be to shipped in especially by our hospital pharmacy because it’s used off license. And they haven’t had any for months and months. There are two alternatives, one caused Kai to projectile vomit, and the other is 96% ethanol, and I’d rather avoid having a drunk/vomity kid.
When I posted the story I was getting desperate, we were running out and it was impossible to get more. But we have so many wonderful people in our life who were visiting the states and able to bring back some for us. Sometimes a bottle or two, sometimes a lot! Thank you Lewis, and Lily and Jamie and Katy and Jen and Lorisa, Breege and Shane and just – everyone. Everyone who has gone out of their way to help us, who offered and who asked friends to help. We’re grateful, and it has a massive impact on our boys quality of life (and by extension, ours).
We’re so very lucky, hey?
#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit#dextromethorphan#delsym
